Biotech & JUSTICE: Catching up with the Real World Order

Abstract

Since its inception in 1990, the Human Genome Project has spurred almost as many ethical and social questions as it has start-up biotech companies. Yet one of the most perplexing challenges of the new genomics is how to guide and govern the use of genetic knowledge in an era of economic globalization. Diagnostic and predictive testing, gene-based therapies, pharmacogenomics, and genetic enhancement are already available or speeding toward reality, leading to ever greater levels of private investment and international marketing. Many share Francis Fukuyama's concern about what genomics portends for our posthuman future, (1) and not only because human nature as we have known it may be at stake. Commercial genetics threatens to exacerbate greatly the rising levels of inequality that already burden the globalization age. (2) Two issues are important: first, defining ethics or justice in a pluralistic and often conflicted world; and second, putting ethical relations or social justice into practice. U.S. law, policy, and even philosophy tend to frame social justice questions in terms of individual rights, civil liberties, procedural solutions to conflict, and equality of opportunity. And, frequently, both individuals and organizations in the United States approach the social aspects of genetics by prioritizing freedom and self-determination--of scientists, corporations, consumers, and even of the nation as an international actor with particular values and interests. The focus on liberal rights obscures the social and economic bases of health and disease and the effect on social institutions and patterns of individual choices and enterprise. (3) African, Asian, Latin American, and to an extent European cultures put a higher priority on social and economic rights within a community than they do on privacy and choice. While genetics research and development spans borders and cultures, principles like autonomy and informed consent bear a distinctive legal and cultural stamp. The philosophical framework within which U.S. bioethics addresses the new international context of genetics needs to be restructured, both to expand the basic moral criteria and to consider how ethical behavior, relationships, and institutions can be defined, created, and maintained globally. This essay will argue that bioethics can find resources for this task in political science literature on globalization, on the still weakening sovereignty of the nation-state, and on the quest for a normative and constructive approach to governance in what has been hailed as the new world order. International research ethics and the recent struggle over the availability of AIDS drugs will show how developing models of governance might apply to the control of biotechnology. The Priority of Autonomy According to anthropologist Sandra Lane and colleagues, individualism, so intrinsic to American culture, is a core principle which organizes the practices and representations--the habitus--of the bioethics community. (4) In their view, the analysis of individual decisions has predominated over social relations, community needs and values, and public health. Moreover, self-determination itself has been considered largely in relation to relatively privileged consumers and even a fairly narrow range of exotic or highly technological interventions. The medically marginalized have been neglected. The four bioethical principles of autonomy, non-maleficence, beneficence, and justice, which were first enumerated in the Nuremberg Code and were then adapted in the Belmont Report and in the bioethics literature spanning decades, are more often than not applied at the individual level. Of the four principles, autonomy continues to receive by far the most attention. And while the pressing question of universal access to health care in the United States has raised the profile of distributive justice in recent years, even adding a global perspective, (5) it is still the case that procedural justice, focused on ethical and legal protections of autonomy, privacy, and confidentiality for those receiving health care in the United States, has been the predominant justice concern. …